An Older Conversation on r/Blind
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I’m going blind
I have choroderimia and it is a slow process for going blind but I’ve just been wondering if there is anything i should do/ learn while im still young and can see? I live in usa
Sorry to hear that. How old are you?
It's late here. I'm going to bed but I'll write back in the morning and answer your question as best I can.
Good morning.
Yes, there are a lot of things you should do while you can still see. Some of them are practical and you'll instantly understand why I suggest them. Others aren't practical at all but don't ignore them - they're the most important ones. Please try to keep that in mind. There's much more to living a good life while blind than knowing how to do blind stuff.
Going blind doesn't come with instructions. Nobody tells us how to act or what to do. If you're like me you're not only the only blind one in your family, you're also the only blind person you know. I'd met a blind person before, but interacting with someone for five whole minutes years and years ago didn't help prepare me for going blind myself. What I'm trying to say is it can be a very lonely and confusing process. How are you supposed to act blind? How do you fit the expectations people have of blind people? Should you even try? What about your plans to be a fighter pilot or a submarine captain or a professional pickle ball player?
Nobody answers those questions for you. Nobody knows what to say. Blindness is rare enough that almost all of the sighted people in the world haven't had to deal with us before and they have no idea what to tell us when we ask.
That sounds discouraging, but it's not. It's lonely, that's all. It's not discouraging because it means you're in charge. You're going to make your own decisions without much outside influence because the outside world doesn't understand. You are the world's leading expert on knowing what you want, what you need, what you don't like, and who you want to be. That's way more true when you're blind than it was before. Blindness is oddly empowering. You loose so much in some sense but you gain a life of your own, a life deliberately chosen by you that isn't influenced by pop culture or your peer group or society's expectations.
Going blind is a great big reset button. It's a chance to start your life over. What will you do with it?
Let's get to the meat of your question. What should you learn?
Choroderimia. Learn everything there is to know about it. Not the kid's version, read the scientific papers and the medical journals. Really understand the hows and whys of what's happening to you.
Learn what resources are available from your local blindness group. They had stuff I didn't even know existed, things like talking alarm clocks and bowls with inner lips built in so you don't spill your soup, and different kinds of software to read web pages aloud. You might not want a guide dog or a white cane or a talking alarm clock yet but there's peace of mind knowing those things exist for you and knowing who to call to get them.
Start a blind bucket list. I don't know how much time you have before you can't see anymore but use it to make visual memories of the people you care about. Go camping with friends, canoe down a river, sled down a hill, put on some boxing gloves and throw some punches in the ring, paint a picture. Trust me on this one - I've learned it's not the things we do that we end up regretting in life, it's the things we didn't do when we had the chance. You might not have a lot of time to make visual memories so use the time you have to do as much as you can. When you get to be my age and the only things you can still see are the memories in your head you'll be glad you didn't skip out on the day in the batting cages to play some more Wordle.
If you're reasonably coordinated you don't need to practice with a white cane. Seriously, a few minutes with one and you're already good at it. It's very intuitive. r/Blind's O&M instructors - the people who teach classes on how to use white canes - reading this are already reaching for their keyboards to tell me how wrong I am but seriously, you already know who to use one, just like you already put your hand out in front of you and feel for the wall when you're walking in a dark room. It's the same instinct. A class or two for a white cane is fine, but don't worry about it being hard to learn. You already know how to use it.
Many people will tell you to learn Braille, but I haven't and don't intend to. Braille is cool but is it necessary? If your phone can read any book or magazine or blog or web page to you, why bother with Braille? I think Braille is like spinning your own thread to weave your own cloth to sew your own clothes. Very cool, and something to feel proud of, but more as a hobby than a necessity.
Finally, one more peace of mind thing. Money. How will you get money? That's a question we all think about when we first get the diagnosis. Life generally costs a little more for the blind while we often end up earning less than average. I don't have any career advice for you, but the people at Lighthouse or NFB will. So will your state's workforce service commission. The important thing here is not to despair. Know what options are available, what services and training opportunities are available, and which career paths are as accessible to you as they would be to anyone with 20/20 vision. You don't need to decide today but knowing what your options are and where to find help when you need it will bring peace of mind.
Going blind is hard but being blind isn't. You'll grieve the loss of your eyesight, but that's sort of expected. The unexpected part is you'll grieve the loss of your potential. You'll grieve the loss of your purpose, maybe even the loss of your identity. It's hard. You'll probably get pissed off, jealous, depressed, and wonder if you somehow deserve this. All of this is natural. Really, I'd be more worried about someone who got a life changing diagnosis and didn't react to it. The grief is natural. It's normal. It will pass. You will remain.
Once you get through the emotional part you'll find actually being blind isn't hard at all. I wouldn't have believed that if you told me before I went through it myself but it's true. Blindness is more of an inconvenience than a tragedy. I'm still me - Star Wars nerd, math nerd, eighties music nerd, teller of dad jokes, and Dr Pepper connoisseur. Going blind changes everything but it doesn't change anything, if that makes sense. The great big reset button resets everything except you. You'll still be you.
I hope something in here helps. I know how unfair and painful it feels when you first get the diagnosis. Just remember after all those feelings go away you'll still be here and life will be okay.
You've got this. r/Blind is always here to answer any questions you have or for those times you just need to rant about how unfair it all is.
You my friend are an absolute rockstar. What a blessing to give this to this young person. On a sidenote I have a very good friend who is blind and you are right, he is the only blind person I have ever known. And like the complete dumbass I am, I’m constantly trying to show him something on my phone.
I like your post with one disagreement. Learning Braille offers you the opportunity to rest your ears. It is nice to read sometimes in silence. Especially on the bus. It is nice to read not wearing earbuds. Braille seems old fashion and many get along just fine without it but, learning spelling and punctuation is easier with Braille. Of course it also may depend on what age a person loses sight. The phone doesn’t always pronounce words correctly. Some words are spelled differently than they sound.
Excellent point. Take my upvote. I hope Tyrans reads this so he gets both sides of the argument and makes up his own mind.
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